Preparing for anti-TNF treatment

It’s been a whirlwind month. Not in a ‘how exciting!’ way, but in a ‘rollercoaster that you’re not particularly enjoying and want to get off now’ way. Several attempts at taking Sulfasalazine / Sulphasalazine led to:

1) Rash on my chest & tightening in throat, ending up in A & E with intravenous anti-histamine via a drip and an adrenaline injection, plus an overnight stay;

2) Second attempt: white blood cell count was too low so stopped & restarted once bloods were back to normal;

3) Third attempt: developed a mouth ulcer, it affected my liver & the white blood cell count dropped again.

I’ve been told to stop taking it and had a chat with the specialist rheumatology nurse today about alternative treatments. Having ‘failed’ (i.e. didn’t tolerate or respond well to) three DMARDs (Disease Modifying Anti-Rheumatic Drugs), the next step is either one final DMARD, specifically Leflunomide, or an anti-TNF (anti-Tumour Necrosis Factor) drug – probably Humira or Enbrel.

The nurse ran through what taking the different treatments would involve and the potential side-effects, as well as handing me lots of print-outs about the drugs. I’m reluctant to try Leflunomide as if I want to have a baby I would have to wait 2 years between stopping it and becoming pregnant.

Humira and Enbrel are both anti-TNF drugs, a totally different type of drug to the DMARDs I’ve already tried. According to Arthritis Research UK: ‘In people with rheumatoid arthritis and some other inflammatory diseases a protein called TNF is overproduced in the body, causing inflammation and damage to bones, cartilage and tissue. Anti-TNF drugs block the action of TNF and so reduce the inflammation.’

I felt quite depressed today realising that I have no option but to try yet more new drugs. Yet the alternative would be worse: given that I have bone erosions, without treatment my bones would be destroyed and I’d need joint replacements. New treatment is infinitely preferable to joint replacement but the potential side-effects do make it scary.

I have a week to think about treatment options and will see my consultant next Friday. It’s not a decision to take lightly and I need to be well-informed first. Hearing from my specialist nurse about people who have achieved drug-induced remission spurs me on to try another new treatment. The uncertainty about getting better is hard (so many ‘What ifs’ spring to mind) but with the support of the rheumatology team, my family and friends, I’m determined to reach drug-induced remission and to stay there.

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Persisting migraine

I find it hard to believe that the neurologist discharged me last week. He has decided that my symptoms (permanent numbness down the right hand side, ongoing migraines) should be dealt with by his colleague in the specialist headache clinic. No reference to whether what I’m experiencing is due to being on methotrexate (MTX) injections last winter. (I’ve researched it and am totally convinced that this is due to the MTX as I never had migraines or numbness before December). The nerve conduction studies and MRI on my brain all came back negative which is reassuring but there is no sign that these symptoms are abating. He suggested trying Gabapentin once I have been on Sulphasalazine (trying to get the rheumatoid arthritis stable) for about 3 months. Frankly, having read the potential side effects, I am not feeling encouraged to try it, as I have a lot of those problems already (such as breathing problems, eyesight issues etc!). So, having been discharged from his clinic I have no idea how long I’ll wait to see the headache specialist. I saw her briefly a couple of months ago as an in-patient but that doesn’t count as I’m now an out-patient again. So confusing.

At the end of the appointment I tried asking him about Postural Tachycardia Syndrome (POTS) as I know lots of people with Ehlers-Danlos Syndrome have it, and that it could explain the low blood pressure, feeling dizzy, palpitations and so on. But he simply said ‘We don’t deal with POTS in this clinic’ and ‘These symptoms are troubling you. Have you considered cognitive behavioural therapy?’ before shaking my hand and sending me on my way. I was stunned to see that he had ticked the ‘treatment’ box on the yellow outcomes form that I had to hand to the receptionist as he had suggested that I take Gabapentin in 3 months’ time, not now, and it is rather misleading. I had mixed feelings leaving, from relief that I don’t have a sinister condition to frustration that the neurologist thinks these symptoms are ‘just migraine’ – permanent numbness and one arm being colder than the other is not typical for migraine. In the meantime, life carries on and I just take it day by day until the next health appointment.

New diagnosis

Another week, another set of hospital appointments – including hand therapy, physiotherapy, hydrotherapy, and blood monitoring. Today (although technically speaking it’s the next day as it’s 2am here) I was in the thoracic clinic for the first time. First, I had a lung test where I had to breathe into special equipment to test my lung capacity and breathing rate. The doctor listened to my chest and my description of the symptoms (coughing up blood and phlegm on a regular basis, feeling breathless).

Apparently I have Bronchiectasis but they need a CT scan of my chest to confirm the diagnosis. It’s a relief to finally put a name to this distressing set of symptoms that I’ve had for 5 years¬† (although I’ve only coughed up blood since last September). There was no time to discuss treatment options so it’s a question of waiting til the CT scan results come in. To top it off, the area in front of my left hear has ballooned with what looks like an infection. That’s why being on immuno-suppressants is such a mixed experience – although it’s suppressing the disease, at the same time it’s lowering my immune system meaning I keep getting infections. It’s a balancing act – hopefully if I need anti-biotics I’ll be able to keep going with the Sulphasalazine to try and get my health stable.

Future remission

Today in the rheumatology clinic I met someone who’s had rheumatoid arthritis for 27 years and has been on anti-TNF therapy for the last 11 years. In fact, he might have been one of the very first people in the UK to go on this treatment. He said the drug has transformed his life. On the one hand, it was reassuring to hear this as I’ve been told that I may have to go on anti-TNF therapy after Sulphasalazine. But on the other hand, it got me thinking. Where do I want to be in 27 years’ time? I really don’t want to still be dealing with this disease. My goal is (drug-induced) remission, and I’ve no idea how long it’s going to take but I’m impatient for it to hurry up. In the meantime, there’s no point putting my life on hold, as realistically remission might take a while.¬† (I’m determined not to think about it in months or even years, but just focus on one day at a time). If only I had a crystal ball to see when (I refuse to say if) I will kick this disease into permanent remission.